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An E. coli Patient’s Will to Live, Part II

Part II in a II-part series on Linda Rivera’s battle with E. coli O157:H7.

Once a week, Jeanine Iyala loads her two kids into the car and makes the roughly 60-mile round trip from Pleasanton to San Francisco to visit her step-mother at Davies Medical Center. Traveling any distance with a 2-year-old and a 9-month-old is hardly convenient but for Iyala, it’s a bittersweet experience, as well.

Iyala’s step-mother, Linda Rivera, is undergoing physical therapy following her year-long struggle with E. coli O157:H7, a foodborne pathogen that kills up to 100 people in the United States each year. It very nearly killed Linda, three times. She’s pulled through, thanks as much to her doctors as to the sheer force of her family and her own will to survive, but she’s not out of danger yet. Even if she were to experience no more health complications–and many victims of E. coli continue to feel the effects years afterward–her battle with the disease has left her seriously weakened. She only began to walk again about 6 weeks ago.

For the past 15 months, Linda has been hospitalized continuously, save for a few very brief breaks. She has missed the graduations of three of her sons, she has missed sports tournaments, the birth of Iyala’s youngest child; she has missed–perhaps most keenly–the experience of simply being at home with her family.

“At first I was angry,” said Iyala, comparing the experience of coming to terms with Linda’s illness to Elizabeth Kubler Ross’s classic five stages of grief. “You know, she’s been robbed and we have been robbed of family times.”

Ask Linda’s friends and family about the impact of her illness and each will eventually bring up the subject of loss: the loss of participating in milestone events, the loss of time with those she loves, the loss of a woman each had come to admire and rely upon.

Linda is very hands-on with her kids, said Iyala, and she was looking forward to similar relationships with her grandchildren, rolling around with them, being right there in the thick of it.

“I know she thinks that’s the type of grandma she wants to be, and it hurts her not to be able to do that.”

Soccer Mom

“I used to be a soccer mom,” said Linda, laying her in bed at Davies. “I miss that.”

Linda was the epitome of the soccer mom. With three boys involved in sports, to say nothing of friends’ kids, as well as her own involvement in pretty much every aspect of her children’s school careers, Linda spent much of what spare time she had either raising money for various activities at school, or driving kids–everybody’s kids–from one place to another.

Robyn Treska, Linda’s friend of 23 years, recalled the time Linda was involved in a serious car accident. She had promised to pick up Treska’s son to take him to a local bowling alley. From the scene of the accident–a fairly grim incident that left Linda seriously injured–Linda called her, apologizing that she wouldn’t be able to give him a ride.

Even her job–as an aide teaching autistic students in her twin boys’ school–kept Linda near the kids.

“I would always stay in her room during lunch,” said 17-year-old Tony Simpson, one of Linda’s twin sons (his brother, Ricky, was out that day). This past year, he said, was the first time he had ever gone to school without having her nearby.

Despite a mischievous grin and his fair, blond complexion, an air of gravity hangs over Tony as he talks about his mother. He estimated he’s been interviewed at least 10 times about the illness that nearly took her, but that doesn’t seem to have lessened the impact of discussing the matter. It is, he noted, the first time he’s been able to talk to a reporter without tearing up during the interview.

“She’s the person I talked to most about everything,” he said. “I could ask her anything, really.”

Seated next to him in the small sitting room just off Linda’s hospital room is Emilee Blankenship, Ricky’s girlfriend of three years. That she’s there, 400 miles away from her own family back in Henderson, NV, seems perfectly normal to her. Linda, Emilee said, had welcomed her into the Rivera family right away. Like Tony, Blankenship took many of her problems to Linda.

“Once you get support from her,” Blankenship said, “she can cheer you up in a second.”

She’s changed

It’s not as if Linda can no longer do these things. Nearly everyone marvels at the fact that Linda still asks “How are you?” when she sees them, not out of custom but in concern. Despite her own suffering, she’s fully aware of the pain felt by those around her.

“She’s still that way,” said Treska from her home in Henderson. “She still worries about the way [her husband] Richard feels and the way the boys feel.”

But Treska sees changes in her friend, as well.

“I’ve lost the person I talk to the most,” she said. Treska’s voice breaks. “We can still talk. She can’t hold a conversation like she used to.”

Linda’s speech has been affected by the illness, as has her memory. She has difficulty with numbers; her memory is a little worse for wear.

“I don’t think she’ll ever drive again,” Treska said. “No, she won’t, because of the problem with her eyes.”

Linda’s son, Tony, understands. “I feel as I’ve lost half my life,” he said. His mother doesn’t seem like the same person anymore.

For the first time, Linda, an outgoing, active woman, relies on others for everything. It’s difficult for Treska to see her friend this way. For a long time in the earlier stages of her illness, Linda couldn’t even speak, said Treska, and it left her feeling even more helpless. The woman to whom everyone else looked for support was afraid to be alone.

“She’s dependent now,” said Treska. “Hopefully, she can get some of that back. Right now, she’s very, very scared.”

A source of strength

In the midst of all this, holding it all together, is Linda’s husband of 13 years, Richard Rivera. A short, stocky guy with a thick mustache, he beams warmth but even beneath that you can see the cogs spinning, keeping track of everything that has to be dealt with, sizing up new elements, appointments that have to be kept, schedules that must be adhered to.

Linda’s physical therapy schedule? He knows it. The kids’ flight schedules for a trip to Hawaii–planned years before–to celebrate their graduation from high school? He can reel it off. Somehow, he manages other commitments, as well, maintaining a delicate balance in the midst of a thousand demands on his attention. Somehow, he manages to remain upbeat.

The Riveras’ friends and relatives watch him in amazement.

“I’ve seen the toll it’s taken on him emotionally,” said his daughter, Jeanine Iyala. “He’s the most devoted man I’ve ever met. It’s really renewed my faith in commitment to one another. He does not leave her side. I have to beg him to leave and to go.”

Unsure of just how committed Linda’s doctors might be to her recovery, he educated himself about his wife’s condition as much as he could, said Iyala.

“My god, he’s a wonderful man,” said Robyn Treska, “but it’s got to be hard to sit in that hospital day in and day out. [Linda] just gets more anxious now. She never used to get anxious before. She just doesn’t feel in control anymore.”

If Richard is frightened, he doesn’t show it, she said, if he’s hurting, it never comes out. “He needs a medal.”

Richard insists his strength comes from Linda. His wife, he said, is his inspiration. “When times get dark, I’m not the one in that bed, she is.”

There have been a lot of dark times, too many. But he takes whatever victories he’s offered. When Linda first used her walker to walk on her own, “you’d think the 49ers had
won the Super bowl,” Iyala said.

“Richard’s my best friend,” said Linda, “my lover, my best friend. He’s the one who’s worked the hardest, keeping the household together.”

Three times throughout the past year, he watched Linda escape death. His choice, he decided, was to sit and blame God or to find meaning in what his family has been forced to endure. They don’t take the little things for granted anymore, he said.

“As long as you keep up the fight,” he told Linda, “I’ll stay here with you.”